For Rajiv Rajan, travel is an ordeal. Chennai-based Rajan is the Executive Director of the disability rights organisation Ektha and was part of the government-appointed committee that drafted the RPD (Rights of Persons with Disabilities) Bill, 2016. He travels frequently for work, yet using any public transport is a struggle for him.

Rajan, now in his 40s, has cerebral palsy and uses a wheelchair. Traveling by train is difficult and risky for him. “Most railway stations have no facility for people with disabilities to move from platform to platform. I have to cross the track on wheelchair, and the wheels can get caught between tracks,” he says. When Rajan used to travel to Delhi by train in the late 90s, he would starve for 2-3 days as trains and stations lacked accessible toilets. “Also, train berths are too narrow for me. So, I would lie on the floor of the train, which can be very painful because of the train’s movement,” he says. The very few seats reserved in trains for people with disabilities get filled up quickly, hence many are forced to use regular seats.

Rajiv Rajan

Rajan’s experience has been poor even during air travel. “The problem starts right at the entrance of the airport. There are no separate parking lanes for people with disabilities. Since I take time to get down from the vehicle, I have to get the vehicle parked and pay Rs 150,” he says. Getting an assistant from the airline is time-consuming too. “This delay adds on to the travel time. As it is, airports don’t have proper toilets for persons with disabilities. Chennai airport has one, but it’s always dirty,” says Rajan.

Sometimes, Rajan had not even been allowed to board the flight. In 2007, he had to travel to Delhi to attend a conference by the Ministry of Social Justice. He was also carrying a letter from the ministry regarding this. “But Air Sahara staff said I couldn’t travel alone as I would cause problems to co-passengers. I then tried to get a ticket from SpiceJet, but they refused too. I couldn’t travel and missed the conference.”

After Rajan highlighted the issue, the Director General of Civil Aviation brought out guidelines to prevent discrimination against people with disabilities. Rajan was a member of the committee that drafted the guidelines, but he still faces discrimination. In the last few years, he has been carried over aerobridges “like a sack of potatoes”, been asked to stand up for security checks, and so on.

But it’s not just transport that is inaccessible to those with disabilities. Rajan says, “Just accessing a toothbrush can be difficult. Even if you live on the ground floor of a building, there will be 2-3 steps at the exit. These things are not designed for you, so it will always be difficult.”

The right to access, only on paper

Back in 1995, the Persons with Disabilities (PWD) Act had mandated the state to provide accessibility for people with disabilities within the limits of its economic capacity. The Rights of Persons with Disabilities (RPD) Act, 2016, removed the clause on economic capacity; that is, irrespective of fund availability, state should provide barrier-free environment in all domains like transport, buildings and consumer goods. Barriers - institutional, cultural and economic - should be removed so that the person can fully participate in society. RPD Act has given the government the deadline of 2022, to make all existing infrastructure disabled-friendly.

In 2015, central government had initiated the Accessible India Campaign (AIC) to make buildings, transport, and information and communication technology (ICT) accessible to some extent. But even these goals have not been met, going by government’s affidavit in the ongoing PIL filed by activist Rajive Raturi.

For example, AIC campaign aimed to make half of all A1, A and B category railway stations accessible by 2016. In its affidavit last August, government said that most of these stations were made accessible with short-term features like ramps, accessible drinking water and toilets. But Raturi, in his response, pointed out that these were only cosmetic changes, without following centre’s own ‘Harmonised Guidelines and Space Standards for barrier-free environment’. Nor were access audits done in these stations as per prescribed template. For example, existing toilets were declared disabled-friendly toilets after minor changes. Instead of lowering drinking water source, an ad hoc platform and ramp was built to it, which was actually slippery and dangerous for people using crutches. Also, long-term measures like lifts for inter-platform transfer were not put up. AIC campaign has no goals to make trains accessible either.

Similar half-baked measures have been implemented in airports too. In fact, the government-appointed Central Coordination Committee (CCC) itself had said in a 2016 meeting that the accessibility provided in airports and railway stations under the campaign was too basic.

In the case of bus transport, the campaign aims to make only 10% state buses accessible. It also completely leaves out accessibility of bus stands and footpaths that are necessary for entering buses in the first place. Government has missed some AIC deadlines too - like the 2017 deadline for retrofitting major government buildings in 50 cities and making half of all government websites accessible.

Lack of accessibility is the main reason why many people with disabilities are unable to get a disability certificate, the principal document for availing government schemes like pension, scholarship and appliances. The 2011 census estimates that there are 2.6 crore people with disability in India. But only 49% of them have a disability certificate, as per a response by the Minister for Social Justice and Empowerment in Lok Sabha in 2015.

First, the number of centres issuing the certificate are few. For people with disabilities living in rural areas especially, finding accessible transport to go far-off centres is difficult. “It would take them 3-4 visits to get the certificate. And once they get to the centre, the building also won’t be accessible to them. How many times can they go up and down the building?” asks Rashmi MT of the Association of People with Disability (APD), Bangalore.

Rashmi

Accessibility is an issue even for people with disabilities working in the public sector. Ajay (name changed), staff at a public-sector bank in Chennai, has arranged a foldable aluminium ramp for himself, since his office didn’t have a ramp. “Every time I go to the office, I open and use it. My mother comes with me to office daily, to help set it up,” he says. This is despite RBI regulations mandating accessibility in all bank branches.

Raturi says that Supreme Court has now directed state and central governments to submit their plan to ensure full accessibility. Only 20 states have submitted responses so far, and some of them are outright strange. “Regarding accessible bus transport, Sikkim has said that it already gives wheelchairs at bus stations, and free bus passes. And Chhattisgarh has said that it doesn’t have a public bus transport at all. They are not mentioning any targets,” Raturi says.

Appliances under ADIP scheme not useful

Lack of good quality appliances also limit accessibility. The central government scheme ADIP (Assistance to Disabled persons for Purchase/fitting of Aids/Appliances) gives grants to agencies that supply appliances to people with disabilities below the poverty line. But as per a Planning Commission report of 2013, the appliances used by many beneficiaries were damaged. Appliances often became damaged within six months or a year, but the beneficiaries didn’t have the money to maintain or repair these. So, they either discarded the appliances or continued using damaged ones.

Other than schemes for accessibility, there are 100-plus government schemes to ensure equality for people with disabilities. But how useful are these?

The missing reserved jobs

The PWD Act had reserved 3% of government jobs for people with disability - 1% each for those with visual impairment, hearing impairment and locomotor disability. The RPD Act of 2016 added another 1% reservation - collectively for people with autism, intellectual disability, learning disability and mental illness - increasing the overall reservation to 4%. Yet candidates with disabilities keep struggling to get this enforced.

Last year, Tamil Nadu Teachers Recruitment Board invited applications for Post Graduate Assistant/Physical Education Directors in schools, but set aside seats only for the first three categories of disabilities, and not for the newly introduced category. Even then the reserved seats did not come to 3% - out of the 1663 posts overall, only 18 were reserved. The notification also said that among people with orthopaedic disability, only those with disability upto 70% can apply, leaving out those with 70-100% disability.

When it comes to reservation for people with disabilities, the catch is that suitable posts are identified by an expert committee, and the decisions of the committee may be arbitrary. “A person in a wheelchair may not be allowed a public relations job because of the assumption that the job needs travel. Another thing authorities do, is to fulfil the quota in the advertisement, but identify that job as suitable for a person with lower level of disability. For instance, a blind person will be barred from applying, but someone with low vision can,” says Rama Chari, Director of the Diversity and Equal Opportunity Centre, Bangalore. ‘Identified jobs’ becomes a ground to deny promotions as well. For example, a junior accountant may not get promoted as senior accountant despite his experience, if the senior accountant position had not been identified as a reserved post.

Rama Chari

But as per the RPD Act, it’s the responsibility of the government to provide reasonable accommodation to the person with disability who is recruited. For example, a person with hearing impairment can be provided an assistant or the right technology and device. Instead of this, government is recruiting people who are easy to accommodate, says Rama.

To counter the discrimination in teachers’ recruitment in Tamil Nadu, TARATDAC (Tamilnadu Association for the Rights of All Types of Differently Abled and Caregivers) filed a petition in Madras High Court. TARATDAC won the case - in December, court ordered the government to complete recruitment with 4% reservation, and without any restrictions on the percentage of disability.

Art teachers being assured by government officials that their jobs would be made permanent as per government rules

But despite such positive orders, the problem continues. A notification by State Bank of India early this year, for recruitment of probationary officers, also gives reservation only for the first three categories. The notification still fulfils the 4% quota, but distributes the seats among the three categories only. This has forced a dyslexic candidate to move court. But not everyone may be able to take the fight to court every time.

Health insurance in shambles

People with disabilities are often denied health insurance or have to pay high premium for it. A retired Assistant General Manager of a public-sector insurance company says, on condition of anonymity, that pre-existing disabilities are not insurable. “Insurance is meant to cover unforeseeable events. If people with disabilities take insurance, they would be paying a small premium but making large claims, which won’t be feasible for the company.” People with psychosocial disability or a high level of physical disability are usually not covered. Even those with milder disabilities may not be covered for conditions related to the disability.

In 2015, central government had launched Swavlamban Health Insurance for people with disabilities, but this is now on hold due to fund constraints. Another government health insurance scheme is Niramaya, for people with cerebral palsy, autism, intellectual disabilities (the government officially calls it "mental retardation", which is an offensive term) or multiple disabilities. The scheme gives insurance coverage of Rs 1 lakh at very low premium, and at zero premium for BPL category. Expenses from any hospital can be reimbursed under it. But the scheme implementation is poor, says S Babu, Assistant Director at APD, who is doing a study on the scheme. APD is one of 64 NGOs in Karnataka that are eligible to facilitate the scheme for beneficiaries. The beneficiaries can’t register directly.

Babu points out that Karnataka is ranked the third best in Niramaya implementation, despite only 4000 people having registered here, as of 2017. Whereas, as per census data, 2.6 lakh people in the state are eligible to be beneficiaries. “And out of the registered 4000, only 10-20% may have used it. If this is the case with the third best state, what about other states?” asks Babu.

S Babu

The main issue, Babu says, is that the scheme is not flexible. For example, out of the Rs 1 lakh coverage of the scheme, Rs 55,000 is fixed for surgeries related to the disability. But surgery is not required for people with mental disability or autism. On the other hand, the tablets for seizures can cost Rs 4000-5000 per month, but the scheme allows only for Rs 4,500 per year for the alternative medicine category under which it falls. Also, the annual allocation for therapies is only Rs 10,000, while regular physiotherapy would cost several fold. “People from remote areas may have to travel some 60 km to get a physiotherapy session for cerebral palsy. Many government hospitals don’t have physiotherapists or occupational therapists either,” Babu says.

Another issue lies in the communication to beneficiaries. The reimbursement of expenses is done by the third-party administrator (TPA) Raksha Ltd. The TPA sends any alert directly to the beneficiary’s phone number. Often the beneficiaries, most of whom are from BPL category, are unable to understand the message in English, and can’t access the scheme.

Meher Taj, mother of 11-year old Nazleem Kouser, says Nazleem’s Niramaya card is lying around unused now. Nazleem, who has an intellectual disability, was registered under the scheme in 2016 by the initiative of her special school. Six months back, when Meher went to APD to submit documents for a reimbursement, she realised that Nazleem’s insurance had not been renewed in 2017. “The school was supposed to do the annual renewal, but it had not happened. I must have got the SMS alert from the TPA for renewal, but I can’t read English, so I probably missed it,” Meher says.